Rufina D asked:
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The course of Rett Syndrome can be improved by therapies aimed at slowing the progression of motor disability and improving communication skills.
Physical therapy should be aimed at maintaining or improving ambulation and balance, maintaining full range of movement or at least functional movement, and at preventing deformities.
Occupational therapy should be used to promote and improve the use of the hands.
Studies have shown that decreasing the repetitive hand movements can lead to greater alertness and better focus, as well as helping to decrease agitation and self-injurious behavior. Intermittent use of hand or elbow splints may be useful in reducing these hand movements and may encourage more purposeful use of the dominant hand. Intermittent weighted immobilization of one hand can also be a useful approach.
Music therapy is used as an adjunct to other therapies, and is useful in promoting communication and choice making.
Horseback riding and hydrotherapy promote balance and help develop protective responses, in addition to being very relaxing and enjoyable. Good Luck!
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Hello…my 3 year old daughter also has Rett Syndrome. There are many therapies that are helpful, but the best therapies depend on your daughter’s disabilities. Occupational therapy has been great for my daughter to help maintain hand function and to teach her to chew. Physical therapy is important to train to walk which helps lessen scoliosis. Speech therapy is important to train on augmentative devices so your daughter will have a voice. If you look at the IRSA website there are many other therapies and descriptions. Also, if you are not on the RETTNET do so…other parents can be very helpful in advicing on therapies and helping you cope.